Music is our life; an ingrained routine – hers and ours. It is meaningful everyday and has been Jessica’s lifetime companion and entertainment. Music is how we have always been able to gauge Jessica’s mood because it is our window into her emotions. Lately though, we are not hearing as much music and this time I’m not sure it’s about mood. This change in music was a clue for us to stop and pay attention. It is important to evaluate why this has happened so it can be replicated if needed.
Our conclusion? Jessica has been demonstrating a partial emergence from the comfort of her self-stim world and an increased desire to be interactive with us. The difference is subtle, but it is there. How did we know this from a slight change in her consumption of music?
Let me explain the depth of our connection to music as it relates to Jessica’s every day life.
Music Has Always Been An Integral Part of Jessica’s Life
When she was a baby, like way back in 1988, the only way we could keep her from crying in the car was to sing. Nonstop. My mom, my sister and I sang everywhere we went.
Over the years, listening to music became her primary leisure activity. Jess easily mastered the skill of independently operating cassette players. She was motivated. We only had to demonstrate once or twice which buttons did what. Her fluency was impressive.
Music was Jessica’s only entertainment and leisure activity; It was her hobby and her love. When she was home (after school and weekends) her time was spent listening to music. Jess could not see to watch tv or movies and had no interest in listening to them either. She couldn’t visually see to read books. We tried to introduce books on tape and she had no interest.
Music = Moods
In the past, when children songs were playing, she was happy. When her room was quiet, it used to mean she was unsettled, worried, or upset. Somewhere along the way, she was introduced to rap. When ‘bad rap’ was playing, she was happy but hyped up in a different way. Rap related to being mischievous.
On days where Jess was having anxiety attacks and meltdowns, we all knew we were out of the woods once she got to her room and turned on children’s music. That’s when we would say, “whew!” and breathe that sigh of relief.
Using Music as Our Tool
Hannah and I learned a strategy that sometimes helps Jess turn her mood around when she is on the verge of a meltdown. It requires careful timing. First, we have to work on finding just the right phrase for the moment that helps her lighten up: usually a careful combination of sarcasm or joking and exaggeration, while simultaneously validating her worry and anxiety. Secondly, when we detect that brief moment of lightening up, we say, “You know what I think? I think we need to listen to some bad rap.” Thankfully, this often works for us.
What is ‘bad rap’ you ask? It is whatever you make it to be. She likes it better when we call it ‘bad rap’ because she feels rebellious I guess. I can take a rap with no curse words in it and call it bad rap and she is okay with it.
Challenges Give Birth to An Impressive Talent
Jessica’s first music collection was cassette tapes. She had so many it became difficult to sort through and find what she was looking for. Amazingly, early on she learned to identify individual cassettes by a combination of the color of the plastic combined with how they sounded when she shook them up by her ear. Being able to independently identify her tapes was an important key for having independence with leisure activities.
CDs Became Mainstream
We graduated from cassette tapes and moved onto CDs. They have become quite an obsession. In the past, Jessica liked to keep her CDs in a stack rather than a holder because of her fine motor skill deficits. I tried various methods of storage and organization over the years but she accepted none. Multiple stacks of CDs became precariously arranged on the top of her dresser.
Occasionally, stacks would cascade onto the floor, sometimes with the domino effect causing other stacks to follow suit. Jessica’s reaction was mixed: sometimes upset, sometimes giggling.
With the transition from cassette to CD, gone was Jessica’s ability to identify by sound. She would have a major meltdown every now and then because she couldn’t find a CD she was looking for. Jess had to rely more on the color of the CD as well as a memory of where she put it.
There were two problems with us trying to help her find the right one. The first problem is that she doesn’t like for us to touch her CDs. The second problem was that she didn’t know the real names of many of the CDs, and she would describe it as the “insert abstract description here” CD. Her only assistance to us in this scenario was her ability to discern colors. She could say, “no, not that one!” as we sorted through the stacks of CDs one by one.
Finally – Organization
Recently, I once again suggested to Jess that her CDs would be safer if she would put them in a binder. Shockingly, she readily agreed and informed me that she had some empty notebooks in her dresser. Wow! That was unexpected. Why now? I have tried to organize her CDs for the last two decades at least. What does this mean? It must mean something.
Something Has Changed
Hannah and I have noticed a change happening for a little while and she and I sat down to discuss our thoughts on what led up to this change. Jess is still listening to her children’s music. When we hear it playing, we still feel a sense of relief. That hasn’t changed. However, we are hearing less music.
This time, we believe it is a sign of positive progress instead of a bad mood. Our discussion led to a focus on the fact that Jessica is demonstrating a partial emergence from the comfort of her self-stem world with an increased desire to be interactive with us.
It is ultra important to evaluate why this has happened so it can be replicated if needed; an informal retrospective analysis of sorts. Hannah and I identified the following events that came together to cultivate this very welcome change:
- Major decrease in stress
- Medication changes
- Waiver Services
Big picture – that is the list of what has changed in her (our) world in the last few years. The separate items just came together like matching puzzle pieces.
Stay tuned for a series of posts describing each of those 4 factors in more depth. I believe the insight might be of benefit and an encouragement to other parents. Not only that, but it will give me something to go back and read in the future when I start getting fuzzy on what happened to bring about this change.
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